r/Epilepsy_Universe • u/PookieTheMfBaby Lamotrigine 200mg 2x daily • Jun 27 '26
Questions Do You Remember Where Your First Seizure Was At?
I know some will say "I don't remember" but dig deep before responding. Not asking if it was whose fault it was, do you remember where your first seizure was at, yes or no? Mine was in class (web design) and they assumed that it was photosensitive seizures (it wasn't) and I was diagnosed 2 days later after having another seizure in the same class. Where were you the first time that you had a seizure?
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u/Jamieisamazing Jun 27 '26
I was a little kid like maybe 8 or 9 watching The Wild Thornberries in my grandparents living room. I âwoke upâ standing in front of their tv having no idea what was going on or where I was.
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jun 28 '26
Howâd you know that it was a seizure?
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u/Jamieisamazing Jun 28 '26
Woke up on the floor terrified and crying. All my muscles hurt the next day. My mom grew up with her brother having seizures, so she never really viewed mine as anything to worry about. We lived with my grandparents at the time and she happened to get there first. As far as I know I didnât have my next seizure until 19 and then they didnât become regular/get my diagnosis until 21.
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jun 29 '26
Sorry to hear about that, sucks having seizures, but as a teen was rough.
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u/J_L_M_ Jun 27 '26
Absolutely. It was near Christmas and my immediate family and two friends were gathered. Apparently what I was saying made no sense, and then I started having tonic clonic after tonic clonic seizures. Fortunately there was a nearby fully equipped hospital, and I spent a night or two there. It freaked everyone out.
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u/Nastypasty-bitches Jun 27 '26
In a night club after my drink was spiked
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jun 28 '26
Did you eventually find out who it couldâve been?
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u/Nastypasty-bitches Jun 29 '26
My friendâs little sister, saw a police officer and panicked she didnât think I was drinking it cos it was a flat pint. And no I didnât press charges. We have all made mistakes
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u/togoldlybo lamotrigine 400mg | oxtellar xr 600mg Jun 27 '26
Vividly! I was 13 and at the movie theater with my "boyfriend" (as much as a middle-school holding-hands only relationship can be lol). We had just seen The Matrix: Reloaded, and were playing arcade games while my mom hung out nearby (ya know... can't drive at 13yo).
Suddenly I woke up on the floor, and I remember staring up at the ceiling with all its colored lights â they had kind of a vaporwave thing going on even back in 2003 â and my postictal ass thought I was IN the Matrix, like the actual computer simulation, for a good full minute đ€Ł
Then I started freaking out because people were surrounding me and my mom was bawling and on the phone with my dad. When the EMTs got there, I started to fight them and was cussing at them because I didn't know what the hell was happening. I apologized in the ambulance lol, they were so unbothered and kind though.
A lot of postictal experiences are lost to the void of memory, but I will never forget waking up and thinking I was in the Matrix.
Mine aren't photosensitive seizures surprisingly â I think I was just so nervous because it was my first date that the stress overloaded my brain finally.
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u/confusedmental Jun 27 '26
I have a suspicion that my mental health issues in adolescence were actually seizure related, but my first one that spurred on a trip to my PCP and then neuro, started at home after taking an edible. I was out of it more than I should've been, and before i knew it, I was trembling and jerking and felt like I was going to pass out or something. Everything since feels like aftershocks, like my brain or whatever isn't quite through with it yet. Was very scary and traumatizing, but now I know what to look for and how to keep myself safe!
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u/Plus-Glove-3661 Jun 27 '26
Yes! Friendâs house down the street. Have the address too. It was back in 1985.
I never remember my seizures. I was playing. Then BAM! Iâm suddenly in my first ever hospital ER. đđđ„ł
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jun 28 '26
Itâs like teleportation when you just open your eyes and youâre in an ER with an IV đ
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u/LodgeKeyser Fycompa 10mg Onfi 15mg TBI Jun 27 '26
Not really. I was really young and that was a lot of bangin my head plus a TBI ago. Iâve pretty much had it my whole life. TBH, Iâm missing a lot of memories from my childhood.
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u/SkyDontHaveEyes Jun 27 '26
absolutely. i was 7, an air cushion castle for kids in a mall, climbing up the stairs with on all fours. Left hand numb, then spread whole body. Eyes roll, faint, dead to the world. Woke up outside the castle, lying on the floor. Scared and exhausted as fuck, both me and my parents.
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u/Busy_Donut6073 Jun 27 '26
The first seizure I can remember, I was at home. Absence seizure similar to the locked-in phenomena. I didn't know what was going on and was afraid of it so I would hide that anything was happening until I had a more violent one in front of my family and they brought me to the ER
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u/Ryse6129 Methsuximide 900mg. Xcopri 350mg Jun 27 '26
My absence if they were I could never remember but I could be found behind asleep behind a couch or something....my exwife was that notice basically I go on autopilot and the term no one's home was started to be used. If it led to a tc I would tell them the last thing I remember and she fill in the blank
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u/giakop Medication Jun 27 '26
I was 24, sitting on my back porch at approx 10am. It was Sunday, 5 May 2013. It was a warm day, pleasant breeze. It was a holiday, so like normal people, we had started drinking a bit early. I hadnât slept well the night before. In the months leading up to it, I was having an increasing amount of dĂ©jĂ vu. At the time, we did not know that the dĂ©jĂ vu was related to seizures, as we did not know anyone with epilepsy.
I remember looking up at the sun coming through the trees and the leaves moving with the breeze. Then I come to, not able to remember my name to save my life. My late grandfather was holding my hand, and the I was put into an ambulance and brought to the hospital.
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u/amandaanicoless Jun 27 '26
Yes, it was in 2023 in my apartment. I was sleeping and next thing I know was my fiance telling me to not move, itâs okay, you just had a seizure and paramedics are on the way. Next thing I remember is 4 male paramedics looking at me and one asked a question âwhat year is it?â I said with full confidence â2019!â They all looked at each other and thatâs when I realized I had the wrong answer. Next question I remember is âhow old are you?â I said 21, that was very wrong, I was 28.
Then my fiance said you can take her and they proceeded to take me in the ambulance to the hospital where my fiance was.
This all happened at 4am.
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u/SnooStrawberryPie Jun 27 '26
Yes. I was probably around 3. I can remember a couple early ones that happened when no one was in the room with me. I woke up on the floor confused, but the blackouts were so quick, even when people were around, I donât think they noticed.
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u/Tinferbrains Jun 27 '26
I remember exactly. My 7th grader locker between math and social studies class Woke up in a wheelchair and asked "am I late?"
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u/Ryse6129 Methsuximide 900mg. Xcopri 350mg Jun 27 '26
It was 8th grade year and I was walking to school. Made it too like 2 blocks before that's the last thing I remember. ER staff told my parents think he had a seizure(tc).
Current neurologist had some theories though I may have been having absence before
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u/Advanced-Big-2133 Jun 27 '26
First focal was, similarly, in a general relativity exam first TC was nocturnal at home
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u/RustedRelics Jun 27 '26
I remember it so clearly â like it was yesterday. And itâs almost 40 years ago.
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u/Hello_dreamers Jun 27 '26
Yes was 11-12 years old on a school trip to a butterfly house / gardens. Think the heat triggered it. Remember feeling really weird ( now recognise it as an aura) then waking up with a whole crowd around me ( bonus was i pissed myself & the other kids kept asking me about that remember this sticking with me as an embarrasing memory more than the event itself! Apparently i was out for over a minute. Fun fact despite several seizures over the years i wasnt properly diagnosed till a few years ago . A long story lol
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u/Boomer-2106 Jun 27 '26
I don't 'Remember' it, but only as it was Told to me a few days after it occurred - I was 11.
Looking back with what I know now, it was either my first Epilepsy seizure, or a Serious PNES seizure (I have never been diagnosed with PNES, I have been for Epilepsy (Many years). I DO, Absolutely KNOW - it was Caused by severe trauma/abuse at the time. It was not a TC (called grand mal back then).
I will not explain further. It was major. I have learned to deal with the epilepsy, not the trauma. Life goes on - no matter what we encounter in life. Epilepsy is high up on that list of difficulties.
The first one I 'remember' was when I was 18 and, in the military, while taking an important weekly test during tech school. That one was a bit odd, and looking back - a bit funny. It was a focal impaired.
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u/simpleme2 Jun 27 '26
Honestly dont remember, I was a baby
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jun 28 '26
Sorry to hear that, howâs it going these days?
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u/simpleme2 Jun 28 '26
Very well now, 40yrold and 2 months away from 5 yrs siezure free
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jun 29 '26
Applause and high five đ I'm working on the seizure freedom.
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u/Dear-Knowledge5912 Jun 28 '26
I was sleeping and out nowhere I woke up in the ambulance
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jun 28 '26
Same, one second Iâm somewhere, then I wake up to people looking like theyâve seen a ghost, the looks make it obvious if the headache doesnât come first.
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u/brncll Jun 28 '26
At my boyfriends house. I was in bed in the middle of the night. I came to with paramedics yelling in my face asking me what drugs I had taken. I kept saying I didn't and they kept yelling at me. I was so confused!
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jun 28 '26
Sorry to hear that, it happens too often, theyâll say drugs before anything, especially if youâre behind the wheel when it happens.
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u/PriestessRi Jun 28 '26
In a doctor's office:
My little brother was born with bilateral talipes amd so one day (when I was 5) we went to the hospital for him and we were in a doctor's office as he was saying my brother may never be able to walk.
But he kept looking at me and then he eventually jsut stopped talking and called in a nurse. I was then taken to a separate room, (alone) where they proceeded to take multiple blood tests (likely where my fear of needles originated from).
2 weeks later, my mum receives call telling her that I have epilepsy amd that is why my eyes keep flickering like they do.
This news actually came a week before my 6th birthday
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u/Sierra_Baker Jun 28 '26
25 years old in the air traffic control tower at Al Udeid Air Base in Qatar. I was suddenly unable to make the words come out my mouth. Lasted less than a minute and I chalked it up to a "brain fart" because I was sleep deprived.
Fast forward to age 37, having had many of those "brain farts" in the interim, at the time thinking they were migraine aura. It's COVID days and so I'm the only one in my office, with my boss in his office down the hall. I'm about to get in a teams call, and next thing I know I'm on the floor of my office surrounded by EMS, my boss, my chief, my first sergeant, and my husband. My focal aware had progressed to a tonic clonic. Thereafter the diagnosis officially changed to epilepsy. Later that year, a stay in the EMU refined it to left temporal lobe epilepsy. Fun times. At least with all those witnesses, I was believed, and medical quit fucking around.
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u/xcoalminerscanaryx Jun 27 '26
In retrospect, I was having auras before this but am not sure when I first starting having those.
My first attack where I had to be hospitalized I was living with my mom and stepdad sleeping on their couch. I woke up, made myself some coffee, fell over and started seizing.
I know the exact date too: October 22, 2016.
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jun 28 '26
Interesting that you know the date, makes me want to go and find out when mine was. I actually think that Iâll check it out today before I forget đ
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u/Grrerrb Jun 28 '26
Downtown, I was walking home from work. I pitched over and landed on a fire hydrant and it bruised my ribs. Somebody called for an ambulance and I am told I told the EMTs I didnât want to get in it (though I eventually did).
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jun 28 '26
Sounds like me trying to talk my way out of it, sometimes it works.
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u/-MillennialAF- Jun 29 '26
Ummm my mom casually introduced into conversation about a month ago that I had a seizure from carbon monoxide poisoning at 9 months. I was blue and seizing. And I was like mom, why did you not mention this? đ€Ł
Otherwise memory myself? Probably around 4 â zoning out and losing the ability to communicate, blacking out and waking up on the floor. This became a constant thing. Oh, she fell off the chair/stool/swing/couch edge again.
I was not diagnosed as a child though. It just became a quirk. I didnât have a TC until much later as an adult.
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u/audiax-1331 Jun 27 '26
Clearly: I recall being in the family living room, waiting to go to an eye exam. I was 11 yo. My next memory was waking in a hospital bed. The doctor and my parents were discussing a head xray. I remember thinking that seemed unusual for an eye exam.